Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

Social Worlds

14 Dec. Fri. 2007. Thank you to the ppl who replied to yesterday's question. If you didn't get a chance, you can go back to that question. If you want, you can reply to that, or this, here, in my journal entry of yesterday, or in an email to me. Or to 4sons. Anyway. That's most comfortable. 4sons and I want our voice to be heard. By us. And through your voices. Our voices need to be heard more. For the next three days, we'll post three more questions. One each day.

Number Two. How has CFIDS effected your social world?

Before I got sick, I had about 6 close female friends. They were in my bridal party. Two were local. Four flew in. The length of time of our friendships ranged from 4-22 yrs. Those who had bridal parties, I was in theirs. We went camping together. Did conferences. Wrote papers. Co-taught courses. One of them once asked, how I managed to maintain my long-term relationships? Enthusiastically I told her. I just love my friends. They're important to me. I have a bond with these ppl. They're part of my life.

I don't have one of those friendships today. Not one. About 7 yrs. ago, I'd had a complication-of-CFIDS-related seizure. A petit. I know I just blacked out. But one of my close girlfriends was there. She said I had a seizure. That's why she called 911. It was in my best interest. She said. Out of her love for me. Her concern. Her not knowing what to do. Her wanting to do the best for me. I was hospitalized for three days. They took me off all my meds. Tre' smart. Tre' legal. B/c, they said, they needed to figure out "what was what." Cold turkey ensued. I became traumatized. By that. And smells. And the tests. After 12 yrs. of CFIDS, I knew they'd find nothing new. But they ran every test. Not believing me: I wanted to just leave. I was so traumatized by the smells and the events, I couldn't get enough of a handle on the situation to walk out. I fell deeper and deeper. Got sicker and sicker. By the end of three dys., it was then I was probly ready to have a seizure. I was stretched more than I had been. I had been staying at my friend's house b/c I was in transition. Left one mold house and one heavy-spraying mosquito island. My friend's house? Mold city. It was also my worst time of year. 100 degrees. 100% humidity.

After the hospital, I returned to her house. I was discombobulated. The hosptial took everything out of me. I stopped sharing my thoughts & feelings w/ my friend. I was also too weak to argue with her that I just needed to rest. She was a mover and shaker. Like I had been. When I was well. Out of the kindness of her heart, she said, she called ALL my close friends. Asked them if they could help and if I could stay w/ each one for a while til I got stronger. I told every friend I was ok. But every friend saw me now as helpless. In danger. Out of control. In that spare bedroom of my friend's house. That summer day. A defining day. A distance was created between my once best friends and me. The Ph.D., once take-charge and successful in everything, able to figure everything out including the unfathomable times, suddenly was presented as a homeless, couldn't take care of herself, desperate person. The more I tried to assert myself, the more my friend took charge of everything.

At some point later, she said "you would've done the same thing for me. I didn't know what to do. I thought I was helping." I take responsibility for what "I" did between my friends and I that day. But that's what happened w/ the illness. It spiraled. Things got out of control. I lost my bearings. Temporarily, no compass.

I would have rather had my time alone. I would have preferred to lose it all in my own privacy. In the privacy I am now in. Where I am dealing w/ no one's alarm. Or over-concern. Fear.

I'm choosing not to go back b/c my world is not like it once was. No active career. No house. No system that remotely resembles the past. I have an existence built around my bed. And my love of the outdoors. And my dog. I can't rush. I can't walk. Or talk. Or think. Or plan. So I assume do it w/ ppl who understand. Are similar. Not identical. Just similar.

My family is part of that social sphere. That I also choose not to engage. They are just as and even more alarmist, in their own way. When I once was in the hospital, my sister was notified, she came in a frenzy, told a dr. to make sure a psychiatrist checked me out before I was released. One came. With a team of 6 internists. Decided I was anxious. Brilliant! Make those interns M.D.'s overnight. "Who was the first pres. of the U.S." "Well. Gee. It's a little hard to think clearly w/ 6 perfume, colonge & moose saturated young interns sparkling from Star Bucks smothering me so could you come back later?" I held my ground but it was tough. I was anxious beneath my exterior. They didn't have to be in med. school to notice that.

My social world is nothing of what it once was. I don't want it to be, given who I am today. I can't do people. I cannot do the world. I can't do social. I can't remember what I'm about to say. I don't have a life to talk about that I wish to share w/ typicals.

If the world recognized my illness, that would make a difference. Sure, I could say I have an immunologic CNS & cerebral dysfunction. To which others couldn't say, my counsin's friend's friend has that and they work despite their tiredness. It's too much to be in the wings of social flight. I save that description for my neighbors, someone w/ who I let myself be suckered into a conversation.

What is your social world like w/ CFIDS? Someone w/ CFIDS for 10 yrs., or 10 months, is going to have a different portrait than the one I have. Naturally. But. What it is?

I have had CFS for 16 years. it has been at its worst in the last 41/2 years. Socially, I endever to do all the &quot;family&quot; things because that is what is most important to me. I'll never get another chance to participate in the growing up years of my grandchildren. DH and I form our social lives around family and extended family. My children and grandchildren, while not necessarily understanding the illness, do know me, know how important they are to me and if I have to miss something because I'm down for a bit, they know it is something I had to do, not wanted to do. In the last five years I have served two churches as Pastor. It has been difficult but managable until just this past six - eight months. We are now looking for a move to one church and closer to my home. There are days I stay in bed and build my streght so I can be available to family and my churches, they all love me and want the best for me. I feel supported and loved. Not always understood BUT definately supported and loved!

I've had FM for 17 years &amp; it has gotten a lot worse in the last 5 years. I used to have friends but I find the effort of trying to make new friends impossible. After all, what do I have to share? Pain? Exhaustion? No memory? No thinking ability? This is what I live with and people get tired of hearing the same old litany all the time. I have aquaintences who keep saying &quot;you look great! You must be well again.&quot; No, I am not well but I smile &amp; nod &amp; tell them I am better. After all, that's what they want to hear, not the painful truth. I have 2 friends who have either fibro or CFS (I have both) who understand but I have to be very careful not to get too truthful. Keep it light. Talk about other things. They urge me to be positive &amp; I try. But these dx's are relentless &amp; I hurt all the time so being positive is very hard.

My Dear Husband &amp; 3 of my 4 kids understand that I can't do what I used to anymore and they are helpful &amp; supportive. I have lost a sister to this b/c she doesn't get it &amp; expects me to be &quot;normal&quot;... &amp; I can't. These diseases have stolen my life &amp; I can't get it back.

I would say that I had an unbelievable social life before CFIDS. I'm a preacher's kid. We moved a lot as youngsters, dad had quite a few churches. I played the piano and sang. My mom and dad and brother and I sang quartets. We had vacation Bible school for the kids. I taught.

I raised a child by myself. I had to work 2.5 jobs for at least 18 years of her life to pull this off. I rarely rested, but had tons of friends for support. I had friends in my neighborhood, friends at work, friends from church, friends of my parents. I was always out, I took my daughter with me. I have friends from college that I was still in touch with and used to travel to Florida to see. I made new friends when I got married to Bobby. His whole side of the family, his children and their children. There are many, many family get togethers on his families side.

People, people everywhere. I socialized every day of my life. It's what makes me tick. People. I need um. I want um. I love um! My daughters friends even considered me a friend.
Sounds like a busy life? It was. I never had a dull moment. Very busy, very happy, very fulfilled. Yep, that's how it was.

That's all over now.

I have become a recluse. Certainly not because I wanted to, but because it's simply to difficult to turn down invitations to absolutely everything, almost always. Period. I can't commit to anything. I can't trust my body to work for me. I can't trust my mind to work for me. I have lost control. After a lifetime of controlling everything, I now can't control a half day schedule. I'm living an hour at a time. Everything is always a maybe. The only thing I'm sure of during a day, is that it could change on a dime and I don't want to be anywhere where there is no where to lie down. That could embarrass my family.

Past friends have stopped calling. No get well cards come anymore. The new pastor of my church has never visited me. I can't be in church, I had to quit my job. I can't care for my daughter properly. These things cause tremendous feelings of guilt and helplessness in me. It's a daily battle.

I no longer have any kind of social life, at all. None. I am home unless I have to go to the doctors. I have become agorophobic. I'm afraid of social situations because I have been out of them for so long.

My &quot;life&quot; as I've lived it for 58 years is over.

I have a new life now. It's entirely different. I have yet to define it. I'm a work in progress, every day, all the time.

Now, this is not a pity party diary here. These are the facts in answer to the question asked. I would not be honoring my Lord if I did not say that I believe in Divine Healing. I believe there is hope because God can do what medicine cannot. I believe God loves me when people don't. I believe that there is a reason that I have been taken down with CFIDS. I do not know why. It is not for me to know. I have turned my illness over to the Lord. I pray for healing. The day I completely surrendered,I made step one towards the healing process.

God is granting me daily strength to push through, and along the way, I pray that he will help my friends, who also suffer from CFIDS, to gain knowledge, strength and peace.

I will never give up hope. Not ever. God says that He knows what's best for his children. He says I must trust him, and I do.

A social world, what is that?
I was a happy, full of fun kid, with lots of friends. I played hockey and tennis, went to Sunday school, Bible class and Church. I worked, in the medical field until I married.

My ME/CFIDS came gradually. In hindsight it began probably when I was 2 after being very ill, I am told. First symptoms, in hindsight, were at age 13 when puberty kicked in and hormones ran fast. I started feeling claustrophobic... had to sit at the back of the school hall.... so I could escape. This 'grew' to not wanting to go into peoples houses, or out to meals. I did not tell anyone, I was careful to live around the things I could not do.
I still enjoyed life and had great friends. I somehow married, though the whole day was very difficult for me... meant to be the most important day of my life.... yet it was sooo hard.

I had a wonderful husband, we had three sons. It was after the third, that I really felt more symptoms, though I had been 'tired and weird, but functional' for many years.

I lost many friends because I could not cope with them, I pushed them away. Coping with my family was as much as I could do. My husband was my best friend, I had a neighbour who was a good friend, but she did not know how things were for me completely. My husband stayed with me and accepted how I was, he loved me.
I managed somehow to be the best mother and wife I could but it was soooo hard, I still did not know what was wrong with me at this stage. When I was diagnosed life went on just the same. I managed.

I could not shop, get gas, go to the school where my kids went, or go to peoples houses or anywhere there were confined places, and people. People zapped me.

When my kids had grown up, I still had no friends.
I have never been to any of my boys homes, ever. They come here for any birthdays or celebrations. At one stage I could not get out of bed to see them. Life was hell. I hated anyone but my husband and sons to come here to the house, I could not cope.

Over the last 6 years I have improved slowly, and in the last 2 1/2 years been a little better. Better enough, sadly, to plan and attend my husbands funeral when he died in a car crash in December 2005. Thank God I was able to do that. When my mother died 7 years ago I could not go to her funeral, I was needing to always lie down at that stage.

My social life now is driving to the local Mall... I have bought a car... watching the world go by.
I now have two good friends both have ME/CFIDS, both helping me with my health. I am driving again, getting out abit further, slowly learning to do more. I can now go into a shop, and not panic.... take my cat to the Vet, though that was hard.
I feel I want some friends again... but where are they?
Baby steps....

I have had CfS/Fibro officially for almost two years. For context I'll go back to pre- March 29, 2006, since that is the day everything changed.

I have always been a poet and a nature lover with a need to be creative so my social life has always been just a couple of close friends, two that I've had over 30 years now, and socializing with my colleagues and family. i've always loved belonging to a group and doing things together with a purpose. Two of my best experiences were: 1. being on my college equestrian team for three years, serving as an officer and always being one of the core group that would pitch in at the farm to make everything work well for everyone and 2. working on 2 grants and heading up two programs that ran on weekends and evenings for children and parents in my district where i worked. In each of these cases I considered the people I shared these experiences with my friends, some more so than others, but we had a good time on and off the &quot;job&quot;. Looking back I realize i have always loved people but been unsure about my worth to them. That just comes from a couple of family issues, cut-offs and negative messages early in life.

I have always preferred intimate gatherings to big parties. I like meaningful relationships that are honest - not socializing just to be entertained. i am never lonely and never bored. A few years ago i learned the importance of sharing more with others - not just being such a good listener - so I have since been working on being more open about issues I'm dealing with as well as hopes and dreams. That led to my discovery that my closest friend is very problem oriented and doesn't respond to the good things i share. She tunes in to things she can fix or give advice for. There's not a lot we can talk about nowadays except her job and my illness. Since she can't fix my CFS it makes her uncomfortable, fearful, resentful. She loves to party - go to plays, drink a martini and go out to dinner. So, in addition to losing a lot of social contact via my involvement with colleagues and family i am finally looking at the diminution of my oldest and closest friendship. I wish friendships could grow with the changes CFS puts us through but for many people friendship is based on doing things and spending time together. It isn't about getting together to talk for an hour just to laugh or to let our souls reconnect.

A wise woman I speak with from time to time told me that about twenty percent of us are &quot;psychically sensitive'. How many of us with CFS are like that - able to pick up on people's emotions and needs before they themselves might even recognize them? When i am with people who are intuitive in that way I feel a greater connection and comfort. Those are the people I'd like to have as my close friends. The thing that has saved me through my time with CFS is that my husband's family (I just don't have much family) are almost all like that. So I have found my sister in law to be a kindred spirit who I can call or just see for an hour and she doesn't need to understand my illness.She just lets me be me. She's an artist and nature lover. My step-daughter also has a natural appreciation for the simple things in life and she has a gentle way of connecting with me while accepting the distance this illness creates.

Most days I don't need to see or talk to anyone but my husband. He knows how to be together quietly now. We read to each other. We always have things to talk about even though we seldom get to go anywhere or do anything much. So I am blessed to have him and his family. I also speak to my parents, who are 79, about three times a week and see them every 4-6 weeks. My mother is too disabled to visit me.

Now that i can't work and am home on a leave I don't miss all the contact - I realize how I would make myself come up to appearing chipper and conversant every day when i really needed to just rest, to close my eyes and be quiet, perhaps just doing a simple craft project.

I miss seeing my family and I want to reconnect with some people i haven't kept up much contact with. This illness has taught me who i want in my life. For the first time in my life i crave seeing certain people who I genuinely feel a bond with. I used to let my friends pick me. Now I am much clearer about which people in the course of my life i want to keep in my circle. They are not the people who most want me - those people i think valued me for my ability to listen to them. It is apparently a rare commodity that I happen to be able to produce almost endlessly.

These days I have learned to appreciate the brief conversations I have on the one or two days i get out of the house each week. I love the health food store. I love the people where i get my hair cut. i am coming to realize that the phone is my untapped resource for conection and i want to use it more for the people i want to stay connected with; I always hated long phone talks even as a teen. i also value emailing with a fellow CFS sufferer who lives near me. She and DS are my most regular social life. DS is great because it gives me the chance to be a part of something bigger with a purpose again. That is what i missed the most about work.

I have for months been wanting to take creative arts classes at our local craft stores. Creativity is what keeps me afloat in joy. It keeps my opiates flowing and heals me. My husband drove me to six stores last summer and none of the schedules worked for someone who needed to take a class that would end by 2pm. i still check the schedules now that I am home. i would love to take a beading or one stroke painting class but so far I had the flu during the one chance i had to take a class from 12-2pm.
Also, they force you to sign up in person. The store is 30 minutes away. That's a day's outing for me; it's not a simple errand.

Before my illness 15 years ago, I was superwoman, whizzing about coping with the kids, career, friends etc. Now, I have a very small world but it suits me, it's all I can cope with. We have two lives, one in the UK and one in Crete. We started our lives in Crete in 1996 because I owed my husband to give him a life and apart from the horror of the journeys, it doesn't matter where I lie around! In Crete we have many friends who are retired or semi-retired, we meet occasionally and it is satisfying. There is time when we are there for me to rest and conserve energy before any meetings and, of course, after.I love sitting in the garden with the sun shining. It makes the inactivity seem OK. In the sun everyone is slower and relaxed. In the UK the family become my world, I love seeing the grandchildren but I am sad that I just sit and watch my husband play with them and without him I could never look after them. I wish I could go shopping with my girls or meet for coffee without my husband driving me to the door and helping me with walking etc. I spend more days in bed here because of the energy the family takes. I don't think my children or their partners have much awareness of what it costs me to spend time with them. The youngest has her own problems with fatigue so she is more likely to know what it is like. I suspect the reason I find I am better in Crete and more able to see friends is that I don't see the family when I am away so I can focus on building up my strength. Yet the thing I love most is my family so this isn't the way I want it, I am not the mother, wife or grandparent I want to be.

I know we are not doctors and I will not hold you to it, but I do tend to research. So - has anyone had any luck with the following? coenzyme Q10L-carnitine (to help the mitochondria function better)and last - ginseng?I plan to can my doctor on Monday and run these by here and ask her for how much of each to take but wanted to put this out to the group, who, I am somewhat sad to say - I trust...

A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...

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